My friend Salima Saxton has a podcast with Jennifer Cox. In this episode, she interviews Penny Wincer and Charlotte Adorjan. We know Penny and Charlotte - in part - because they are “our people”.

Our people because they have lived experience of caring. There is an autism thread running through this conversation. Caring is often unfair. It’s very often gendered. The burden falls on the women.

These are also the stories that are mostly untold. The untold stories of women, and carers. Untold stories of love and care. Untold stories of womens’ experience and the complexity of motherhood.

This is important that I’ve made a transcript of the conversation below (it won’t be entirely accurate as I’ve had to use automated transcription) but it should give you enough sense. You can also listen above.

"I've had to embrace the fact that I am now a carer. It's really hard to get your head around that, and the feminist voice in my head is screaming 'Don't give up your career'. But actually, what I want to do is try to make it work for me, rather than me trying to change it. 

Welcome to 'Women Are Mad', where we invite women to bring their anger into everyday conversation. We're all feeling it, let's get together to work out what to do with it. I'm Jennifer Cox and I'm Salima Saxton.

'Riddle me this, Salima, with your Cambridge degree and your excellent brain, why have countless successive governments failed to solve the caring problem of this country?' 

'When you say "this country", you mean Britain?'

'I mean Britain, because I've got the numbers for Britain. They're bastards. I'm sorry to be cynical, but I have the answer because I've got a sheaf of papers in front of me that I'm rattling away. There are 1.25 million sandwich carers in the UK as recorded. Sandwich carers are people caring for an older relative as well as a young family. I know for a fact that the actual number is higher because so many people don't think of caring as an identity. Instead, they think of it as just a natural part of life or an obligation, which is partially why the government hasn't gotten to grips with providing a real solution. The other reason is that 68% of these sandwich carers, remember these are just the recorded numbers, are women, and women are not permitted to speak up about their dissatisfaction or rage. They'd be seen as uncaring, as cruel, shirking their responsibilities. But if you put the problem back to these women who are voiceless, it sorts the whole thing out. It's gone under the carpet, we can leave it there, and that's the answer to my Riddle Me.' 

'Okay, well, thank you for answering your riddle. I'm very pleased that we're doing this special episode actually, this week, then. Related to Carers Week?'

'Yes, so we must say, this is a British thing, isn't it? It's the first week of June every year: National Carers Week. So, who have we got with us today?'

'Our first guest is Penny Wincer, she's an acclaimed author, a book coach, a podcaster herself of the brilliant podcast 'Not Too Busy To Write'. She's a parent, and she's a carer. Oh, and she's recently swapped hometowns actually with our fellow guest, Charlotte Adorjan. Charlotte hosts the brilliant 'Village Lantern' podcast and she's recently moved with her family from London to Melbourne. Both her children, Essie and Woody, have autism and as a family, they've launched "Woodism", which is an award-winning art collaboration between Woody and his dad who has turned Woody's unique phrases into linocut prints. My particular favorite one is "I love you all the way to the end of counting." Thank you so much for being here, we really appreciate it. Should we dive straight in? I'll go with the first question, the first formal question: What makes you angry? Penny and Charlotte, you should go first. Penny, go for it.'

'I've been really surprised, actually, by how the older I get, the angrier I get about everything. There is this narrative, I think, that as you get older you get - there's a lot of talk about "oh I don't give any shits anymore". Actually, I do give a shit. I give a shit about a lot of things.

 And so of course, that means lots of things make you really angry. The more life experience we have, the more injustice we see around us.'

'Yeah, yeah. Charlotte?'

'Yes, I mean this whole kind of angry women thing. There's that quote "if you're not angry, you're not paying attention" or something. And I feel like the people that aren't angry are probably the men, to be honest. Or they're the ones that don't directly get affected by the issues that we are facing. Do you think that it's actually that there were women, many women, I would say, who sort of forgot to get angry and weren't encouraged to develop a vocabulary for it? So it just sort of stays there in a nice package kind of under the surface and normally gets conveniently diagnosed as something else, like anxiety, depression, migraines. And this is why we've started this, essentially. Because there's so much mistaken rage out there. Also, it's been interesting, some of the response actually, because some people have said, "You've never struck me as an angry person, Salima". I think we're all much more multifaceted and able to express anger in many different ways. And actually, if we were all listening and paying attention to every other human, we could, I think, we would all connect with some kind of anger within us. Which brings me to it being National Carers Week, actually, as well. But, Charlotte, continuing on with what you were initially saying, does any of that anger come with navigating being a carer as well as being a parent, as well as being a woman?'

'Well, I think it's funny because I've had quite a lesson from my autistic kids on you know, they really hate unfairness. Their gauge for fairness is really solid. They hate being wronged. And to be honest, a lot of my rage comes from the world not being a level playing field. And if you add in things like being an unpaid carer, or the fact that I'm a copywriter in advertising by trade and it's a very male-dominated world. And you know, when I left my job, my boss, I remember him saying "You know when I think of a word to describe you, I think angry." And I was like "Oh my God, my 22-year career and this is the one word." And I thought, "Well yes," because it was never a level playing field and I was always pissed off because I never got the good briefs or I was always having….. To say, 'Well, why am I doing a four-day week now I've got children, when the dads, when they start having babies, they don't put their hands up for a four-day week?' You know, why? Like, what do they not want to see their children? Who's looking after their children?

So, I've always worked for myself since I was 24. When I went on maternity leave (and I use this term very loosely) I did not take maternity leave with either of my two children. But, it was interesting because I was spending a lot of time with other women who were on maternity leave, right? Because I met through my local neighborhood, a fantastic London neighborhood where we had to organize our own kind of meetups. There was loads of stuff going on.

I made some really good friends that year because there were women around, which was awesome because they were taking maternity leave. I was not jealous of them one bit because I was dipping in and out doing a bit of work, coming back and hanging out with them, hanging out with my child, going back to work doing a bit of back and forth. It was great. It was the dream, basically.

But they all went from really intense full-on careers to looking after a baby 24/7. First of all, I was not jealous of that, those two extremes. And then they were having to make the choice between going part-time and basically still having to do the same job because otherwise, they would never get anywhere in their career but earning way less money, or they would go back full time and they would spend all their money on care for their child and also feel really, really guilty and also not really want to be away five days a week from their child either.

I just felt like there were no good choices there. It just felt like there were no good choices in any of those. And if you take the time, then you take the hit. Your career takes the hit because you lose all of those years while everyone else is still kind of slogging away trying to make it work.

Absolutely. And I mean, even I, you know, I was so much more affected financially by having kids than I thought I was going to be. I was the higher earner. I'm not married anymore, but at the time, I was the higher earner per day and I thought, well, that means that we prioritize me and my work. And then we did, at first, and then slowly over time and a second child, suddenly it's not quite so much of a priority anymore, even though I was the higher earner initially. And I think that's actually really, really common as well.

And I think what I didn't understand when I was a younger woman was the hit not just in going part-time but the massive hit you take on your career for the rest of your career by slowing down a bit at that point but also on your pension. You know, the difference between women's and men's pensions since the pension cap is unbelievably huge, frighteningly huge. Yes, and it's because of the care work that women do. It's so true.

And then the care work that we do later at the end of the career because the numbers there are still startling to stop your children. I mean obviously, you know, Charlotte and I have disabled children who will require more support. But even if you don't have that and your children grow up, it's very likely that if you were the one at home caring for children, you're very likely to be the one that steps in when mom and dad, and mom and dad-in-law need that support because, well, you've already worked part-time for years, so

 why wouldn't you step up and do that? You know, there's no catching up from that, you become the go-to person at that point.

I think also the lack of catching up comes down to identity and confidence, right. Now having stepped out as an actor for well quite a few years when my three kids were young, launching myself back in has required an iron will, a kind of rhino skin, and what I just keep thinking, 'Well, you know, you just, just now or never.' So then I kind of oscillate between like wild abandon, enthusiasm for what's going to happen and it's happening, and panic.

Yeah, I think it's underestimated the impact of taking either slowing down or taking a break from a career on what that does to you and what that does to other people's view of you.

I was a photographer for many years, and when I first had children, that was my job. And it is actually a very masculine role, you know, there are now quite a few female photographers, but actually, when I started out an assistant there was hardly any. Even in the early 2000s, there were only just really just coming up, and I was the one that definitely on set I worked with loads of women, but I was the one on set who had the kind of traditionally masculine role.

So when I had my second child, I do feel like I disappeared. People assumed I wouldn't work. I lost work because people just didn't ask me because I'd had a second child.

*

I'd love to know where your ambitions lie for both of you right now. Do you have strong personal ambitions, Penny, Charlotte, unrelated to anybody else? It's very interesting because I've changed my entire life. I've moved from London, where I was born and, I think, I've only ever lived a mile from where I was born to literally the other side of the world. I'm in Penny's hometown now, weirdly, and she's in line which is nice.

I've changed everything and, to be honest, it's difficult because you want to cling on to things that you knew and loved. I had this career in advertising, a 22-23 year career that I worked really hard for. But the whole time, I was fighting a system that wasn't set up for me to be in. So yes, it has a quite male, Mad Men kind of vibe, and people would say it's changed a lot but not if you've got children or anyone with additional needs that you need to care for.

I'm meeting so many amazing women that have insane careers and they've had to become carers and reinvent how they work. Maybe that's where the multi-hyphen method has come from. So many women have lots of strings to their bows now because to be honest, we can't put all our eggs in one basket anymore. We need flexibility to the point of breaking. I mean, we never know day to day. Like this morning, I was woken up by my daughter at 2 AM and that was the day.

So if I had to go and do a day in an advertising agency coming up with amazing ideas, writing brilliant stuff, and presenting to clients, I'd be a dribble of a person and no one would get the best of me. It's really difficult but I've had to kind of change my entire world. 

Now, I think maybe I need to reinvent what I see as success. Actually, for me now, success is being able to give my kids the time they need. I think this is the issue when you've got children who have a disability. It doesn't necessarily get easier the older they get. Often it can get harder, and you're needed more. 

I'm now dealing with lots of mental health issues, things I never thought I would have to deal with as a mom. There's none of this in the kind of baby books about how do you talk to your child who wants to kill themselves. It's really difficult, so you've got to be there. You can't be like, "Sorry, I've got to go off to a meeting about a chocolate bar and sell a chocolate bar to millions of people." It's really difficult. 

So not only has my ambition changed from being about me, but I also need to make money for them because they're going to need financial stability growing up. It's almost like I have to decide where to put my energy. I have such little energy left for the bit that needs to make me money. Actually, I'm asking myself, "Why am I giving it to huge corporations who are going to make billions off my ideas, whereas I'm getting an ulcer and a child who's sobbing and needs me?" It's really difficult, so it's a bit of an epiphany for me.

Silencing is the problem. If these are your priorities, then you must be allowed these priorities and people need to hear them and listen to them. Yes, I mean, I think that's it because a lot of carers' voices just get squashed because A, we're really tired, and B, no one really wants to hear it. They're like, "Oh, that sounds really hard but anyway, cool, I'm just gonna pop off."

That's why you got called angry. I think it's because it was really unwanted. And if you explained it to people, they would just be like, "This person's moaning." And you're like, "No, no, I just need to get across why today is quite a hard day."

Coming to the other side of the world, weirdly, I've kind of formed this underbelly of carers, my kindred spirits. They're all from all walks of life. The other day, I was in the supermarket and I got this scream across from the other escalator. It was a friend of mine. She's a Jewish mom with two autistic children. She fell into my arms sobbing and she's like, "I can't do this anymore." We had a moment in the supermarket and everyone was kind of going around us. I reassured her, telling her, "You can do this. You're amazing."

Her day was basically going to be spent coaxing one of her children off the sofa to eat because her kids were in rock bottom autistic burnout. After we buoyed each other up, she went off. I thought to myself, "These are my people."

These are my people, where there's no rage anymore. The anger's gone. We don't have time for anger; we're too exhausted to even fuel the anger. It's just, "I need you, help me. Here's what you need." 

Last week, when I was confined to bed with the flu, I texted a friend and told her I was unwell. She immediately offered help, "I'm bringing Bolognese." It's not about sympathy or superficial comfort, it's practical help, a question of, "What do you need? Here's what I'm going to do." These are the people that understand you. 

When I'm with these individuals, the rage dissipates, because we're on a level playing field. There's no pretense, no small-talk about Johnny's tennis lessons. Our kids aren't involved in such activities like everyone else. We're just on a level playing field, and that's when my anger subsides. That's when I feel the most at peace and the most like myself. 

This is a new development, something that's only happened recently since I moved to the other side of the world. Perhaps when you have to make new friends, you end up finding kindred spirits more easily. 

Now at 46 years old, I've observed shifts in my support systems and friendships. As you become caregivers yourselves, have you noticed a change? Have surprising people entered or exited your lives? 

What I've found is that some friends here, friends of my husband since we moved to Melbourne, have gone out of their way to understand the type of autism my children have—PDA, Pathological Demand Avoidance. They've read up on it and followed the same people as me on Instagram. They've put in the work, and that is a mark of a true friend. 

My experience, on the other hand, has been interesting. Since my schedule isn't flexible due to my son's needs, I can't meet up with friends outside of my immediate neighborhood. It's stressful to take him anywhere, so I stopped doing that a long time ago. Consequently, I don't see my friends that don't live close by very often.

Nevertheless, the friends I've made in this neighborhood have been incredible. Though I didn't make friends through my son's peers, I made incredible friends through my daughter. These friends have embraced my son, known him since he was quite young, and even help out when we go on holiday. 

Interestingly, I was forced to ask for help. As a single parent, there are times when I literally cannot manage everything on my own. For instance, when my daughter was invited to a birthday party but was too young to be dropped and left, I either had to bring my son with me, or someone else had to pick her up and take her. It's situations like these that make you ask for things you wouldn't ordinarily ask for.

"If I hadn't been in that situation, I would message people, 'Oh, who's going to so-and-so's party? Can anyone else swing by and pick up Agnes on the way?' And someone would be like, 'Yeah, sure. No problem at all.' Then, I'd take her there with my son, and my son maybe would stop coping after half an hour. I'd say, 'I'm going to skip out. Can anyone else drop her home?' And there'd be like three volunteers going, 'Yeah, we'll drop her home. No problem.' 

We're in this really quite incredible community here where people just stepped up, but I had to learn to ask. I learned to ask, and actually, this comes back to my other caring experience. I really, really, really, really hate not being independent, and part of that comes down to the fact that I was a young carer as well. I cared for my mom when I was a teenager.

If you meet and speak to any young carers, one of the things you'll find is that they are hyper-independent. I had to learn how to look after myself at a very young age, so asking for help does not come naturally. Like it doesn't for a lot of women, but particularly for someone who didn't -- I would say -- was not being looked after by anyone from when I was about 12. 

Arthur has forced me to confront that and the challenge it's about. And if he hadn't made me do it, I'd be having to face that when I was older and needing to receive care myself. Because we don't like the idea of having to receive it. We're very scared of having to receive it because we see it as something that is something that none of us want. 

We talk about it as being the worst thing in the world to go into a home where other people would care for us or to have our child constantly having to care for us. But, it's a really natural human thing to happen that we need care towards the end of our lives if we're lucky enough to live a long life. 

But there is also a real problem there because there is a natural desire to care, but I think that desire is exploited in women. Far fewer men are expected to, and women are doing it at least ten years earlier. And they're often doing it for much longer. I think double the amount of time that men are doing it, and in terms of the people who are doing it for more than 35 hours a week, it's 75% women.

To replace unpaid care in the UK would cost something like 162 billion. The amount of money that unpaid carers contribute to the economy is the equivalent of running a whole other NHS. So, if there weren't unpaid carers, the whole society would collapse. It would completely crash. 

I don't know what the figures are now. They're much higher because there are a lot more carers now than there was pre-pandemic. There's a lot more people living with chronic illness now.

If someone is a carer and they're listening to this right now and they're struggling, the thing you have to do first is admit that that's what you're doing, that you're a carer. It can take people years to admit that that's what they're doing. They don't want to see it. 'I'm just a daughter, doing her job, doing what's expected.' 

But the first thing you have to do is admit that this is work. It is unpaid work, but it is care work, and it's on top of the relationship you have

 with that person. It complicates the relationship you have with that person. They might hate receiving that care, for instance. This can be a very complicated relationship.

So, I think the number one thing you can do first is always admit that's what you're doing. Like with a lot of things, as soon as you kind of admit it, then you can open up to other things, like maybe admitting that you might not be able to do it all on your own. Which can be a really difficult thing because sometimes people, even though it's very difficult, want to be able to do it all on their own, but physically can't anymore without some serious consequences.

What would you say, Charlotte? Yeah, I mean, and also connection with people that are similar to you, because silence is really dangerous. Penny and I are both writers, and we're obsessed with telling stories. There's a reason that women need to tell stories because otherwise, it all just becomes unsaid it gets lost.